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Scan results. Hoping for understanding for what to do next.
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Scan results. Hoping for understanding for what to do next.

› Forums › General Melanoma Community › Scan results. Hoping for understanding for what to do next.

  • Post
    • September 11, 2011 at 3:31 pm
    Karin L
    Participant

      Impression: Many of the subcentimeter hepatic lesions are smaller or absent compared to previous.  The largest hepatic lesion (1.3 x 0.9cm) and enlarged lymph nodes (3.2 x 1.7cm and 1.8 x 0.8cm) within the left inguinal and obturator regions are unchanged.  Bony metastases unchanged.

      *****************

      I should be thrilled but for some odd reason I am disappointed?  Dr. had suggested I might be in remission at this scan so I feel I let myself and my family down?  I wish I understand this reaction because it makes NO sense.

      Impression: Many of the subcentimeter hepatic lesions are smaller or absent compared to previous.  The largest hepatic lesion (1.3 x 0.9cm) and enlarged lymph nodes (3.2 x 1.7cm and 1.8 x 0.8cm) within the left inguinal and obturator regions are unchanged.  Bony metastases unchanged.

      *****************

      I should be thrilled but for some odd reason I am disappointed?  Dr. had suggested I might be in remission at this scan so I feel I let myself and my family down?  I wish I understand this reaction because it makes NO sense.

      Doing nothing for now.  Next scan in 3mos. ( May start Yervoy at that time).  One of my questions is…how long does IL2 treatment boost the immune system to keep working?  (hopefully that made sense)  First scan after treatment was kicking mel's tush…now it seems to have stalled?  Maybe I just don't understand this disease very well.  Do any of you have anything of offer my thought process that maybe I am missing?

      Lytic disease…can this condition eventually heal itself?  The residual pain (compared to previous pain) is totally livable but my mind wants to believe pain = active melanoma. 

      Thank you in advance for any replies.  I am just recently able to do some research and it can be so confusing and overwhelming!

      Karin

    Viewing 5 reply threads
    • Replies
        • September 12, 2011 at 7:08 am
        FormerCaregiver
        Participant

          Karin, I can understand how you might be feeling at the moment. While your results are encouraging, it is wise to be aware that melanoma is still a problem and one should be very vigilant for any new signs and symptoms.

          I wonder what your doctor means by remission?

          Unfortunately, there is nothing predictable about melanoma although appropriate treatments can have positive results.  IL-2 therapy can have long-term beneficial effects in some people allowing a small number to have no evidence of disease for a long time.

          I don't know if lytic disease can eventually heal itself. Perhaps someone else can offer some opinions about this?

          I agree that researching melanoma can be confusing and overwhelming. However, some people in this forum know a great deal about things so please don't hesitate to ask.

          Hope this helps.

          Frank from Australia

          • September 12, 2011 at 7:08 am
          FormerCaregiver
          Participant

            Karin, I can understand how you might be feeling at the moment. While your results are encouraging, it is wise to be aware that melanoma is still a problem and one should be very vigilant for any new signs and symptoms.

            I wonder what your doctor means by remission?

            Unfortunately, there is nothing predictable about melanoma although appropriate treatments can have positive results.  IL-2 therapy can have long-term beneficial effects in some people allowing a small number to have no evidence of disease for a long time.

            I don't know if lytic disease can eventually heal itself. Perhaps someone else can offer some opinions about this?

            I agree that researching melanoma can be confusing and overwhelming. However, some people in this forum know a great deal about things so please don't hesitate to ask.

            Hope this helps.

            Frank from Australia

            • September 12, 2011 at 11:57 am
            jim Breitfeller
            Participant

              Karin,

              Based on your scans, you are at a stable state. This means your immune system is fighting back. It is a tug a war between progression and regression. You are at an equilibrium, not enough soldiers /T-cells to take the hill/ tumors.  Your body need to produce them and that takes time.  It can be over 4  months before the T-cells over take the cancer cells. It just takes time.

              • September 12, 2011 at 11:57 am
              jim Breitfeller
              Participant

                Karin,

                Based on your scans, you are at a stable state. This means your immune system is fighting back. It is a tug a war between progression and regression. You are at an equilibrium, not enough soldiers /T-cells to take the hill/ tumors.  Your body need to produce them and that takes time.  It can be over 4  months before the T-cells over take the cancer cells. It just takes time.

                • September 12, 2011 at 4:07 pm
                Karin L
                Participant

                  Thank you thank you thank you both for your replies!  I am diriving myself nuts and I was in a such a good place before this last scan.  I AM going to get back there. 

                  Dr. means NED (remission).  He was pretty confident at this scan all would be clear.  When it wasn't is when I felt I let him, myself, and my family down for not being able to reach that goal. 

                  Your posts encourage me in knowing it's possible for the immune system to keep fighting and possibly win.  That is what I wasn't sure could happen.   I will be wise and remain diligent. 

                  It is SO comforting that you who are also battling this black demon take the time to respond to those of us who need encouragement and/or answers, opinions, thoughts…..Bless you.

                  Karin

                    • September 13, 2011 at 1:22 pm
                    FormerCaregiver
                    Participant

                      Karin, I wonder if you seeing an oncologist who specialises in dealing with melanoma? Please don't feel that you let anyone down because melanoma often behaves as we don't expect.

                      Of course, it is possible for the immune system to keep melanoma under control. However, nobody knows with any certainty what melanoma will do and who will respond to any particular treatment.

                      Best wishes

                      Frank from Australia

                      • September 13, 2011 at 1:22 pm
                      FormerCaregiver
                      Participant

                        Karin, I wonder if you seeing an oncologist who specialises in dealing with melanoma? Please don't feel that you let anyone down because melanoma often behaves as we don't expect.

                        Of course, it is possible for the immune system to keep melanoma under control. However, nobody knows with any certainty what melanoma will do and who will respond to any particular treatment.

                        Best wishes

                        Frank from Australia

                        • September 13, 2011 at 7:00 pm
                        JerryfromFauq
                        Participant

                          Karen, You cannot let your family down with this disease!   You sound STABLE, I'm sure you have the state of mind about where you are that I had when my Melanoma specialist kept telling me after several 3 months scans.  "You are essentially stable.."  Of course that was not what I wanted to hear.  I wanted to hear NED.  I came on this board and asked "How long can this continue?"

                          Charlie responded that he didn't know.  That he was stage IV and had not been NED in 12 years.  (That was three years ago.)  He's still here and so am I.

                          After 20 months the treatment stopped being effective, and my tumors went wild.  My Oncologist switched me to another treatment that I requested, and now after 31 months on this treatment I am still stable.  I don't feel that I have let anyone down.  (A little disappointed at not being NED,) But still enjoying life, loving and being loved.  Still seeing my Onc every 3 months.  He likes seeing me with a smile for him and my wife love seeing his smile when he comes into the room after each 6 month scan!  ( I kind of like his smile too!)

                            
                          I'm sure that your family is proud of you for continuing this fight.

                          • September 13, 2011 at 7:00 pm
                          JerryfromFauq
                          Participant

                            Karen, You cannot let your family down with this disease!   You sound STABLE, I'm sure you have the state of mind about where you are that I had when my Melanoma specialist kept telling me after several 3 months scans.  "You are essentially stable.."  Of course that was not what I wanted to hear.  I wanted to hear NED.  I came on this board and asked "How long can this continue?"

                            Charlie responded that he didn't know.  That he was stage IV and had not been NED in 12 years.  (That was three years ago.)  He's still here and so am I.

                            After 20 months the treatment stopped being effective, and my tumors went wild.  My Oncologist switched me to another treatment that I requested, and now after 31 months on this treatment I am still stable.  I don't feel that I have let anyone down.  (A little disappointed at not being NED,) But still enjoying life, loving and being loved.  Still seeing my Onc every 3 months.  He likes seeing me with a smile for him and my wife love seeing his smile when he comes into the room after each 6 month scan!  ( I kind of like his smile too!)

                              
                            I'm sure that your family is proud of you for continuing this fight.

                          • September 12, 2011 at 4:07 pm
                          Karin L
                          Participant

                            Thank you thank you thank you both for your replies!  I am diriving myself nuts and I was in a such a good place before this last scan.  I AM going to get back there. 

                            Dr. means NED (remission).  He was pretty confident at this scan all would be clear.  When it wasn't is when I felt I let him, myself, and my family down for not being able to reach that goal. 

                            Your posts encourage me in knowing it's possible for the immune system to keep fighting and possibly win.  That is what I wasn't sure could happen.   I will be wise and remain diligent. 

                            It is SO comforting that you who are also battling this black demon take the time to respond to those of us who need encouragement and/or answers, opinions, thoughts…..Bless you.

                            Karin

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